Never enough...

Never enough time.
It's amazing to me how so much time can pass between my posts. Last month, while I remembered to blog, I chose to journal instead. I needed to write -- physically write. There is, quite simply, never enough time for me to get caught up, but I needed to get my thoughts on paper. 

Maybe it is a problem with my priorities.
As many of you know, my youngest has had an interesting journey. During the past four years of his life (mind you, he is four), he has had surgeries, hospital visits and stays, appointments, tests of all kinds, rides in the ambulance, medications, scares, and struggles. Through it all, though, he has managed to be our support system. Amazing how he can make us laugh when he is the one fighting. 

Recently, he has been an emotional roller coaster. The doctor said he may be because of the new medicine we are trying, which has several possible side effects. Yes, yes, it could always be worse,  but, as his Momma, I hate (did you hear the disdain in my voice?) watching him going through yet another obstacle -- and we aren't even sure it will work. 

Of course, it's never easy.
To make a long story short, G has brain defects: two to be exact. One is minor and will hopefully stay that way. It's brain tissue (cells of sorts) that are extending past his skull and resting along his spine. Worst case scenario: brain surgery. We are trying to keep this one in the backs of our minds (no pun intended), because Doc says it should "grow proportionately" with G's brain. If it does, it can stay there. If it doesn't, we'll notice a change in attention, balance, and possibly headaches. We wait on this one. Pray daily and wait.

The second defect is much more challenging. To spare you the medical history of how it got there (while he was a fetus), I will tell you in my terms: he has "extra brain cells" that didn't make it to the outside tissue of the lobes of his brain like it was supposed to while he was a fetus. So, he has "Heterotopia" - also know as Gray Matter Heterotopia. If you want the medical explanation, click here. (It's Wikipedia, but it is easy to understand.) Basically, this "gray matter" (extra cells) are "misfiring" and causing seizures. 

As of February 17th, we now know that G has had even more abnormal activity than we originally thought. After a sleep-deprived EEG, we learned he has been having several series of "mini-seizures." These mini-seizures go unnoticed to us. We cannot see them. The problem becomes that these mini-seizures (also known as "absence" seizures) can lead to full-blown seizures (tonic-clonic). Thus, the start of new medication. 

As his Momma, it has been excruciatingly difficult to know that I can't see or don't know when he is having these "mini-seizures." A Mom should know these things.

The good news is the potential for G to grown out of the "mini-seizure" with the help of the medicine. However, the bad news is that we're approaching the "most critical years." Apparently, your brain grows more or changes between the ages of 6-7? (Or, something goes on with your brain during that time that the Doc is worried about.) Clearly, I am NO doctor. :)

Now, we wait. We watch. We laugh. We worry. Laugh some more. And, we love him. Every single day. What else can we do? He has no clue of the dangers, side-effects, or stress. He knows he goes tot he doctor a lot. He knows he has a "big, smart brain" that she checks on to make sure it's working right. :) And, for now, that is exactly what I want him to know. We take the meds for 2 weeks, off and on, and check back in the Doc. Then, we visit again in May. She assures us this is the easiest of seizure meds on his liver and other vital organs. Talk about testing your faith. 

Through it all, I try to live each day like "normal," whatever that is. I try to be the tough Momma my boys need me to be, but not a second goes by when I don't realize how precious time is, how much I appreciate G being able to communicate with me, and how hard he fights even though he "looks" normal.

So, never enough time? Maybe.
But, these days (and most days before today), G (and L) comes first. So, if I run out of time in my day to post to my blog, reply to emails, grade papers, read a chapter, do laundry, wash the dishes, return texts or phone calls, or even pay the bills, because I was too busy playing with G, I know that the people closest to me understand. And, really, what else matters?

I don't know what the future holds, but I never, EVER want to look back and say, "Oh, I wish I spent more time with my boys."